Interim Maintenance

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Over the past couple of weeks Hugo has finished phase 2 of his treatment and started phase 3, interim maintenance.  No treatment break, this time we were straight into it. We were given the rest of Hugo's treatment plan, all 3 years of it. This means we also have an end date which is September 2018. For a planner like me it's good to know what we are dealing with, what is happening and when. However the pages and pages of treatment schedule which now sit in our blue folder are without doubt daunting.

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It's only hair

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Given the enormity of what Hugo is going through it seems silly to be concerned about hair loss, vain even.  But ever since his diagnosis it feels like we have been waiting.  We were told it was going to happen, that it wasn't a question of if, but one of when.  It could happen quickly they said, or it could take weeks, months even.

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We're going to the Zoo!

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Today marks the 2 month anniversary of Hugo's diagnosis.  It feels like we have come a huge distance in that time.  The immediate shock has been replaced with new emotions, equally as difficult, but perhaps less intense.  We have found our way in the darkness, adjusted somewhat to the new normal and found light in the amazing way Hugo has coped with his journey so far.  His strength has been contagious and we are all still standing strong.

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A Letter to my Son

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Dear Hugo

When we were at the hospital in those dark and difficult days after your diagnosis, the doctors talked to us about the barrage of drugs you would need to take.  They tried to prepare us for what was ahead, for the side effects you may potentially experience.  The list was long and scary and I worried that somewhere in the process of trying to heal you we would lose all the little bits of you that make you who you are.  That our happy, loving, easy going, sensitive child might disappear before our eyes, replaced with a child I no longer knew.

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Grandad on Duty

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Yesterday saw us heading up to GOSH for another dose of methotrexate administered by lumber puncture.  This was our fourth trip since being discharged and we have been starting to feel like pros with our routine.  We know what time to leave the house (early!), the route, what to pack and what we need to help cheer Hugo up when he comes round from the anaesthetic.  However, this trip was different.  Richard and Henry were off to Legoland so grandad was on duty!

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Consolidation

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We are now 4 days into the second phase of Hugo's treatment, consolidation, a short phase at only 3 weeks.

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